For all of my brothers traveling down this wicked path with me, please know hope is still alive and well for all of us. I have not posted for a while as I am enjoying my life to its fullest and have put PC in the back burner until the day before the PSA labs are due.
My story is a bit unique in the fact that I am still on the first regiment of HT 8 years after the diagnosis, which consists of a monthly shot of Firmagon and 50 mg of Casodex daily. My provider has never had any one on Casodex successfully as long me and insists that I stay the course and not fix what is not broken.
All scans clean as well as CBC labs etc. The only heath issue besides, the obvious, I have in spite of a vigorous exercise regiment, is high blood pressure and need to see a cardiologist. I suppose high cholesterol and blood pressure medication are next for me.
Take care all and please stay well
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poofers
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Wow! 8 years on Firmagon and Casodex! For my dad together, first Casodex only, than Eligard and Casodex and finally Eligard alone worked for 5 and a half years, than PSA spiked and mets in LN (local and distant) were identified. So we will switch now to some new hormone treatment.
bicycling 20-60 miles every other day except for the day of and the day after the Firmagon injection. No electric bike though. It is all leg power. Some days are stronger than others, but I suppose that's the price I have to pay being on HT treatment for 8 years. It also helps that I live in the Florida west coast which affords me flat trails and good year-round weather
Me too on all counts except for the flat trails. We have another FL rider in your mileage group on the forum as well Addicted2cycling. He is working up to a annual century in July. Are you using strava?
Your post gives me so much hope for my husband.. thank you!
What a wonderful inspirational post to wake up to Poofers . Thank you very much for taking the time to write, it gives me and, I’m sure, many of my fellow sufferers on this forum HOPE - you can’t put a price on what that does for our morale. Good luck my friend - long may it continue. Kind Regards Darren
Great news and keep on fighting. I enjoyed reading your post and it fuels me with fresh energy. Never change a running system seems also to be valid for PC. I also trust in vigorous exercise, but added whole food plant based diet. I add only supplements required for vegans (B12, Omega 3) and my own individual cocktail (curcuma, pomegranate).
This gives me a lot of hope. My PSA was 27 when the cancer was found - confirmed via biopsy a month ago today. The biopsy wasn't great so I have a bone scan and MRI coming up and my initial visit with a urologist in a little more than two weeks.
I would have like to have known about it earlier than I did, but my previous urologist failed me. While I was her patient, three out of five PSA tests were well above normal (two of them above 4 and one of them above 5), and each alone should have been enough to justify ordering a biopsy.
Which is exactly why, after my July 7 meeting with my new urologist, I'll be filing a complaint with the California Medical Association and whatever other regulating organizations there are. In the interest of keeping other San Diego patients safe, the urologist that failed me is Carol Kashefi. I now refuse to use "Dr." or "MD" when referring to her.
DaveBSD, my husband went through one uro in Tulsa, OK, starting prior to 2003, which is when his PSA started rising, then through three uros in Vero Beach, FL, from 2009 through 2014, PSA still rising, then to a famous surgeon in Celebration, FL, in 2014, who did not deem it necessary to repeat a biopsy with a 3t mp-MRI and a PSA of 14.1 prior to performing a simple prostatectomy. This last famous surgeon then tried to convince us (with the Florida Hospital group - now AdventHealth - tumor board behind him) from August 2014 through the end of 2018 that the rising PSA (reached 1.1 after a non-productive "salvage" surgery) was not BCR.
Some people live long on ADT alone. That was what professor Epstein said to me at our first meeting. I still had an early taxotere chemotherapy and my PSA is under 1. (4 years after starting ADT.) Somebody else on this forum is also having a PSA between 1.1 and 1.9 after 6 years on Firmagon injections only. How often are you having scans and which scans are you taking? I was offered to add simply bicalutamide to my Firmagon injections but I refused as I believe that it can be toxic to the liver. I was taking statins until very recently but stopped to have a drug holiday. I also like you feel the effects of long term ADT on my phisical abilities.
Right on there warrior 😂😂😂. That’s a good tale you tell. I’m 6 years now on Xtandi, second longest for my doctor. I really would like to have a few more years like yourself. Keep doing what you are doing 🙏🙏🙏🙏
Have you changed your diet or done anything else to improve your labs, vitamins or minerals? My husband is on Nubeqa and had the Orch surgery last year, with bone mets, but stays anemic, elevated calcium and sometimes elevated potassium, lipids out of range and others, no energy at all. His PSA is also <0.1 but he's tired all the time and does not want to do anything. Congratulations on your success, keep it up!
Going on five years of ADT treatment PSA 0.1 with Zytiga, six month Eligard injection, Prendisone, Provenge infusions two years ago. Never give up Never surrender. Leo
a good read. My dad diagnosed with 226PSA months ago. Did cat scan and bone scan and it appears no bone or organ spread .. only a few lymph nodes swollen.
Biopsy still 3 weeks away so I’m shitting bricks that his PSA has rise since or cancer may spread within this time. I see people saying their PSA doubled in 2 weeks. Oh man I’m getting freaked out with this damn wait
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My Story
Age 52. T3bN2M1b with two bone mets. PSA only 5.45. Confused, scared, father of two, need some support and encouragement.
Erleads Medication
